Ouch Talk Show 10 th March 2017 bbc.co.uk/ouch/podcast Presented by Emma Tracey. I Had Six Children to Get Pregnancy Right

Transcription

1 Ouch Talk Show 10 th March 2017 bbc.co.uk/ouch/podcast Presented by Emma Tracey I Had Six Children to Get Pregnancy Right You are listening to Inside Ouch. I m Emma Tracey. Hello, welcome in. With me today I ve got Lana Grant, a mother of six kids who is on the autistic spectrum and the author of From Here to Maternity about pregnancy and birth from her perspective. Hi Lana. Hi. And another part of your job is raising awareness of autism as well, is that right? Absolutely yes. So, you do presentations and that kind of thing? Yes. I do lots of talks and presentations focusing specifically on girls and females on the autistic spectrum. Yeah okay. So, you have autism. Yes. How does it affect you?

2 Well, mainly I would say and I always say that actually the anxiety is the biggest disabler for me. Anxiety, which is very common in autistic people, male and female, tends to be the thing that stops us from doing what we want to do, from being able to fulfil our potential really. So, my anxieties, because I wasn t diagnosed until I was 38 Wow. I had all sorts of diagnoses of anxiety, depression, postnatal depression, bipolar disorder, personality disorder which was discounted. So, lots of different diagnoses that I never felt fitted me. But the way that my autism presented before my diagnosis was very much in those meltdowns: the anxiety of not wanting to socialise with people; of not being able to go out to social functions, I found that really difficult and I didn t understand why I found that difficult. So, it kind of presented in that way. I struggled in jobs because I didn t always understand other people s approaches towards me and found that really difficult and would kind of spend a lot of time ruminating over that I guess. I have a lot of sensory difficulties as well or sensory problems. What kinds of sensory problems, if you don t mind me asking? No, that s fine. Hypersensitivity to sound, so particularly very loud noises that I m not in control of. Textures, I used to struggle a lot with labels in clothes when I was smaller. But obviously my parents didn t know what the problem was because they didn t know about autism then. Foods were very difficult as well, I was probably what you would call a picky eater.

3 So, you mentioned that you were diagnosed at 38, which is very late I guess. How did that come about? Because I d had so many diagnoses of mental health problems, my upbringing was very straightforward: I had a happy family life. But I found constantly that I struggled with going to school. Primary school wasn t too bad, but then it really hit home when I went up to secondary school because I went to a girls school and the girls that I was at school with changed, so they had matured I guess whereas I hadn t really matured. And does that happen a lot with girls with? Yeah, we tend to see, that tends to be why so many girls are diagnosed in adolescence. That s if they re lucky obviously; some of them aren t diagnosed until they re in adulthood. But lots of girls find that where they were in primary school they were quite nurtured because they were quiet and compliant and they were kind of mothered by the other girls, then they move up to secondary and those other girls have matured and of course they re finding their own way and their personalities. And that can cause problems because as an autistic girl you may not fit into that; you may not fit into what they like, what they re into and understand the subtleties of conversation, the sarcasm, all of those things that are going on. So, I think adolescence and secondary school is a really tough call for autistic females and males. And that involves puberty and everything as well. Absolutely, which just magnifies, the autism just magnifies the issues with puberty that neurotypical people go through. With us it s just bigger I think.

4 You ve got quite a special interest in autism and puberty don t you, and how people might be able to support? The issue with puberty is that there are lots of sensory issues that come into play, and particularly for females, which can be quite difficult. It s a change, your body is changing, your mind is changing, and obviously if you re autistic we don t really like change. We don t want things growing on our body that weren t there before; we find that really difficult. The sensory issues around using deodorants, around periods, all of those kinds of things. And I just think that preparation for our young people is really, really important. And also understanding the complexities of relationships at the times of puberty because many of our girls can become quite vulnerable at that time. They hear the stories that are going around about what s happening with other relationships and things, think that s true, and it s not necessarily true. Girls talk about what they ve done with a boy, and for our girls they listen to that and think, oh okay, that s what everyone s doing then, so maybe I need to do that and that obviously puts them in a really vulnerable position. Especially then when you think that emotionally very often autistic girls are slightly delayed emotionally. And what do you find happens then? Well, they end up in relationships that are maybe not the best for them. They end up maybe doing something, and they might tell someone who they perceive to be a friend, then that so-called friend might then go on and tell somebody else so then it s all around the school what s happened. This happens for boys as well; it s not just girls, it happens for boys as well. So, there s that risk of exploitation I think. A lot of it is worse obviously with social media, mobile phones. If a boy says, send me a picture of you in your bra and pants and you re a typical girl you might think, gosh,

5 I m not going to do that. An autistic girl may not even think. They might think, oh yeah, okay I ll do that because then you ll like me and then of course it ends up around the school, and there are issues there obviously. So, if the key to getting girls and boys with autism ready for puberty is preparation and talking about what will happen and how that might feel for you and what strategies you might be able to bring in to manage that for you, how do you help teenagers with autism around all the relationship stuff? Because preparation does that work? How do we support them then? I think preparation is important. I think the problem within education is that actually we focus very much on the physical technicalities, I call it the technical part of sex: which bit goes where, that makes a baby, this happens. We don t focus enough on relationships with neurotypical children or with autistic children. But I think it s about being able to deliver a package to children where you re talking about those relationships. But I also think it s important to empower our girls to be able to say, That doesn t feel comfortable to me. I don t want to do that. So, we can t change everybody else in the world, that s just not possible, but what we can do is we can empower our girls to say, Actually no I don t, that s not right, I don t want to do that. Right, so focus on the emotional side of relationships in sex education classes? Yeah, I think so. Also I think it s really important, I mean when we have children that go into primary school we give them a key worker because that supports them, and that key worker is almost like a translator to the neurotypical world.

6 And I just think even as an adult now that you sometimes need that key worker, not the same one, but a key worker through life actually someone you can bounce things off. You need a neurotypical go-between. Yeah, definitely. Who kind of has one foot in each world and can help. Yeah, and somebody that has your best interests at heart. That s the key, isn t it? Yeah, and can counsel and support and advise. Neurotypical is people without an autism diagnosis? That s right yeah. You talked about the key worker, and I suppose that leads me into getting pregnant in the first place, that s intriguing to me about how someone with autism kind of approaches that, and then being pregnant and then becoming a mum. Tell me what are the differences for a woman with autism in all those things and how can they be supported better? I think really we have to go right back to basics. First of all we have to get clinicians understanding that women are autistic or girls are autistic first of all, and how that autism may present, because we are still in a position where some clinicians feel that girls are not autistic, it s a boy s issue, or

7 if they do feel that girls are autistic then they re maybe not knowing exactly what to look out for. So, we need the diagnostic criteria to be shaped up a little bit more and to be ready for girls. And then really the issues around getting pregnant are not that much different, other than the sensory issues. And obviously the Facebook group that I ve got I ve got I think 220 to date I think it is, we get new members daily, so 220 members who are all mothers. With autism? With autism. They re either diagnosed or they self-identify. There are quite a lot of people identifying as autistic who haven t been diagnosed now? Yes, and that usually tends to be after a child has been diagnosed, so they might have a child. Yeah, because I asked you about your own diagnosis earlier but we got side-tracked. So, it happens. You know what we actually had last week on the podcast a woman with ADHD who was diagnosed as an adult when her son was diagnosed. Is that what happened to you as well? Yes. My son was diagnosed and throughout that process, in some areas it s quite an in-depth process, so during that process you have to reflect a lot on what they were like as a child, as a baby etc. and read a little bit about autism. And then you start to think, oh okay, I was like that. Oh, I was like that and then kind of the bits fall into place and make sense to you. So, yes, I was diagnosed after my son was

8 diagnosed, which seems to be the same: a lot of mums are pursuing that diagnosis for their child and then recognise actually the same traits in themselves. A lot of people say that being diagnosed with any impairment is a relief because it helps you to figure stuff out. Is that what happened to you? Yeah definitely. I often say that when I got my diagnosis it changed my life, because when you ve spent the whole of your life feeling like you re a failure because actually everyone else is getting on with things, everyone else was going to school, going to college, getting their A-levels, and I actually just couldn t do that. So, I thought, well either I m really stupid or there s something wrong with me. Why can t I do this thing called life that everyone else appears to be able to do really successfully or relatively successfully? Why can t I do that? So, when you spend your whole life telling yourself you re stupid or you re rubbish to have a diagnosis that says, actually do you know what, you re not stupid, you re not rubbish, but you just think differently and you have a different way of communicating and seeing the world that s a massive, massive relief. Sure. So, let s go back to the Facebook group. What s it called? It s called Mums on the Spectrum. We talked about the making of the baby. Yes!

9 Let s talk about pregnancy. You and those mums what are the things specifically to women with autism around pregnancy? And again what would you say could be done better in terms of supporting? The initial difficulties are usually sensory ones. I ve spoken to quite a few women who are so hypersensitive to those changes in their bodies that sometimes they may be looked at as kind of erring on the side of hypochondria. It s a bit like puberty: you feel the change, you feel different and that s difficult to handle, difficult to deal with. Having another person growing inside your body can be quite difficult. So, like kicking and moving? Yes. What did that feel like for you who s got sensory issues? I found it quite painful actually. I d go to the midwife and I d say, Ooh, it really hurts. It hurts when the baby moves! and I was looked at as if to say, Yeah and? What do you want me to do? And I think if somebody had just said to me, Well, do you know that s probably because you re quite hypersensitive, that s okay, it s all right to feel like that then maybe I wouldn t have felt, oh gosh, I m just a failure and I can t do this pregnancy thing. I think the other thing that causes many, many women, myself included, a problem is that the minute you become pregnant your body becomes public property. You have to go and engage with health professionals. Suddenly you become public property: people want to check your urine; they want to put blood pressure cuffs, which again I found

10 really painful and just thought that I was being a bit pathetic because, you know, it s a blood pressure cuff, but I d be kind of cringing and thinking, oh that really hurts! So, there are all those things. And you re kind of opened up then to lots of people coming into your house. Sometimes I think the NHS is a massive institution in itself, it s a big machine, so you go in and what staff are delivering are what they do on a daily basis, but for those of us on the spectrum we re not always sure what s happening and what s going on and it s not explained particularly well. Because it s quite tricky for a neurotypical person actually. Yeah. You see different people all the time. Yes. You might have to get an examination that you weren t expecting. Yes. So, for an autistic person that s just magnified. Yes, it is. As you say you see different people so you don t have a consistent person, which is why I advocate for birth partners to be empowered to speak on behalf of their partner. And if there isn t a family member then again it s about having that almost key worker system that you ve got

11 someone you can trust that can advocate for you. You have six children? I do. Even though it was really painful when the baby moved, it was horrible having the blood pressure cuff. Why? I mean, it s so rude to ask a woman, I d never ask a woman, Why have you got so many children, Lana? it s such a rude question. But it s an interesting question to ask why you went ahead and had six kids even though it was all very stressful. Traumatic. And traumatic. I think they were probably a special interest. I loved my babies. I love my children desperately, and I think I just loved the prospect of being a mum, of creating these new humans. And also I just think sometimes I felt that I hadn t quite got the pregnancy thing right, I wasn t doing it correctly. So, before my diagnosis I thought, do you know what, everybody else seems to do this pregnancy thing really well, but I get really anxious and really stressed, so maybe if I have another go at it I ll get it right. And that sounds really silly to a lot of people, but actually if you think about the autistic brain a lot of people on the autistic spectrum are perfectionists. In my head I kept thinking, I ve got to have this textbook birth that I have read about and I ve seen on the television, and I m not having it. And actually to be honest with you I never did have it, so there won t be seven

12 children! The specialist interest thing, explain that for people listening: what s a special interest in terms of autism? A special interest, yeah, it s been called many things. Some people used to call it obsessions which we don t like because obsession points to something that can be quite harmful to the autistic person or someone else, so we talk about special interest now. And that is just something that an autistic person gets involved in, but they re really, really heavily and intensely involved in that and it s something that they can do to calm them down, something that they can use as a reward system as well: if I get through this meeting this afternoon then, if my special interest is trampolining, when I get home tonight I ll trampoline for 20 minutes. And lots of autistic adults do use the trampoline and have all sorts of different special interests. Do you have any special interests at the moment then? Mind kind of range from listening to music; I used to have lots of constantly, constantly listening to music, usually the same song or the same album until I knew all the words. So, I would say probably at the moment autism is my special interest and has been for a long time because my whole life is autism based really, so that s probably my special interest. Which is useful I guess, or is it? It s handy.

13 Is it useful? It is, it s very handy when you live with other autistic people, so it is really handy. But I was talking to someone recently who did an event for people with the same impairment as her, and after a while she had to give up the event because the people around her were getting ill and she was getting ill, but she was pretending not to be ill so she could look after the people that she was doing the event for, and it all kind of fell over if you know what I mean. Yes, yeah. Is that a worry or? I think I ve been through so many years and years of counselling and sessions about knowing that I have to put in protective barriers for myself, I didn t do it for a long time and I did burnout. And after my diagnosis I had mental health breaks, I had breakdowns where I struggled. But my husband s really supportive because he will say to me if he thinks it s getting too much for me and I m getting ill, You maybe need to calm down a little bit. But I ve also put in my own protective factors as well. So, if I do a talk I ll stand in front of 150 people and speak for two hours that will wipe me out for the next two days because of all of that social interaction, that stress, that having to be on show. And what I used to do before I was diagnosed, if something like that because sometimes just going to work would wipe me out because of the social interaction I would feel very guilty if I had an afternoon nap; I d feel very guilty if I wasn t playing with my children

14 because actually I was exhausted. Whereas now I don t beat myself up about that. I put those breaks in for myself. I guess that s the same for the Facebook group and managing that as well? Yeah. I ve got to say the Facebook group is something that I m massively, massively proud of. When I first started it I thought there would probably be about 12 people in it, the people that are my friends that usually come and listen to me at talks. And then within 12 months we ve got over 200 people, and it s worked really well. But those women in that group are amazing, they re just fantastic. The peer support that they give to each other is phenomenal and it blows me away every time I look at the group, and I do look at it daily. Tell me a bit about what are the main things people talk about. Because I m in a big blind mums group and I think a lot of the things are around carrying your baby on your front or your back. Yeah. They re around trying to spoon-feed when you can t see, and then when they re older keeping tabs on them, trying to help with homework. I think initially there s a lot of stuff about the sensory sensitivities around breastfeeding, around giving birth, delivery, that kind of thing, about pain relief, how that s going to work. But a lot of the mums that are in the group, not a lot, but a high percentage of them are past the baby toddler stage. What they re talking about now is having to go up to the school gates and to appear to be social with other school parents because that s really hard. And anyone who s

15 been a school mum will know that that can be really difficult because people kind of bunch off into groups. Yeah, cliques. Yes. And if you find social interaction difficult you don t quite know how to become involved in that group. So, you might stand at the back; you don t know when it s appropriate to maybe interject or to speak about something. And I ve kind of learned over the years that when people say, Oh hi, how are you? all they want you to say is, I m fine thanks. How are you? they don t want you to say, Oh, well do you know what, I didn t sleep last night and the dog s been sick today and I m a mess. They don t want to know that. But as autistic women very often we do overshare. Right, so it s about counselling each other on how to just get through that school run? Yeah. Right. Lana Grant, thank you so much for joining me. I ve learned a lot. Thank you. So, Mums on the Spectrum is the Facebook group. Is it a closed group or can?

16 It is, it s a closed group, but if you search it you ll be able to find it. It s not a secret group, you can find it. Send a request. I do check you out and just make sure that you re who you say you are, and then you can enter the group. It s not just for women with a diagnosis; it s for women who identify as autistic? Yeah, if it was just for women with a diagnosis we probably wouldn t have over 200 members. You ve been listening to Inside Ouch. If you want to hear more of our stuff go to bbc.co.uk/ouch. You can find us on Facebook, follow us on or you can us your story ouch@bbc.co.uk.